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Anyone diagnosed with a cavernoma?

Posted by guzzie @guzzie, Oct 28, 2016

Hi, has anyone been diagnosed with a Cavernoma? I had a bad hemorrhage in July, they originally diagnosed me as having a stroke then cerebral hemorrhage. I have byeen in and out of the hospital until mid September when finally being diagnosed with Cavernous Malformation or Cavernoma. Neurosurgeon says to not do anything that most likely it will go dormant but my Neurologist wants me to see a Vascular Cerebral Surgeon. If you have a Cavernoma what treatment have you received? My bleed was 3x3 now it is less than 1x1 and starting to show some calcification. I'm not on any meds, can only take Tylenol for headaches which I do get daily. I have severe anxiety now, every pain I automatically assume another bleed. If you have been through this, how long did it last?

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Barbara | @barbjowilliams | Apr 13, 2025
In reply to @caira "About 4 years ago I got a excruciating headache. I've never had headaches before. I would..." + (show)
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About 4 years ago I got a excruciating headache. I've never had headaches before. I would only get a headache once every couple years. It was so bad after 2 days I went to the emergency room because it was like no headache ever. I thought my eyes were going to pop out of my head. They originally diagnosed me with a aneurism. Then they did more tests and said it was a Cavernous Malformation. I was in the hospital for 14 days at U of M in Ann Arbor, MI. My Cavernoma is in the left frontal lobe. It was only 3mm when this happened. It is now 6mm. They have sent me to Neurosurgeons, Neurologists and now pain management. The Neurosurgeon said they don't want to do surgery do to it being so deep in my brain. Neurology tried every drug imaginable and nothing worked. They put me on Oxicodone which doesn't take the pain away but makes it manageable. I have done nerve blocks which is 6ahots in my head to see if that work but it didn't. They have tried Keppra, lamitctal, god there is too many to count or remember and nothing seemed to work. Now my pain management went Opiate free and they want to put me in some drug called Suboxone but I heard it's a ugly drug and don't even want to try it. Now I am in major pain daily with no relief. I take Norco but it seems to make my stomach feel yucky. Since you can't take anything like Asperin, Alieve, Motrin or any NSAID it makes it hard to try to find something to take. I have also had anxiet due to this because you feel like your just going to hemerage it hurts so bad. A lot of people have seizures due to Cavernomas but I don't have them. Hang in there I heard about a doctor in Ann Arbor that has found a new trial drug to help the pain. When I locate his name I will share. If you hear of anything please do the same. Hopefully people like us will find relief one day.

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Hi,
I have a CCM and was diagnosed by a Neurology Surgeon last year and he said that this diagnosis is very rare. He is very concerned with my complexed health history. Baroreflex failure is a big issue, because my high bp can cause this to bleed out. I see this Surgeon in September 2025 for a f/u(yearly). The medical professionals can't seem to come up with a regimen to help stabilize my situation. I must have a target directed at me because I keep getting blindsided with all of my rare health issues.

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cjcorner | @cjcorner | Dec 25, 2025

I was double bent (decompression sickness) and survived. As a result I have cavernoma in my brain. The only thing that helps with my super bad headaches is 1/2 of an excedrin along with 5 mg's of Valium. I have had these headaches since 1996, when I was injured on active duty with the Air Force. It took a long time to find this combination, and its the only thing that helps. I hope this helps someone else. Good luck all...worst head pain ever.

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